Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment

Developmental Medicine and Child Neurology

Volumn 50, Issue 8, 2008, Pages 618-624

  White koning, Melanie ^a   Grandjean, Hélène ^b   Colver, Allan ^a   Arnaud, Catherine ^a  

^a INSERM   (France)

^b NEWCASTLE UNIVERSITY   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CAREGIVER; CAREGIVER BURDEN; CEREBRAL PALSY; CHILD; CHILD PARENT RELATION; CONTROLLED STUDY; CORRELATION ANALYSIS; DISEASE ASSOCIATION; DISEASE SEVERITY; EUROPE; FACTORIAL ANALYSIS; FEMALE; HEALTH PRACTITIONER; HUMAN; INTELLECTUAL IMPAIRMENT; INTELLIGENCE QUOTIENT; MAJOR CLINICAL STUDY; MALE; PAIN; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; QUALITY OF LIFE; QUESTIONNAIRE; SCORING SYSTEM; SOCIAL SUPPORT; TEACHER;

ADOLESCENT; CEREBRAL PALSY; CHILD; FEMALE; HUMANS; MALE; MENTAL RETARDATION; OBSERVER VARIATION; PARENTING; PARENTS; PROFESSIONAL-PATIENT RELATIONS; QUALITY OF LIFE; QUESTIONNAIRES;

EID: 48749101679     PISSN: 00121622     EISSN: 14698749     Source Type: Journal    
DOI: 10.1111/j.1469-8749.2008.03026.x     Document Type: Article

References (33)

1. White-Koning M, Arnaud C, Dickinson H O, Thyen U, Beckung E, Fauconnier J, et al. Determinants of child/parent agreement in quality of life reports - a European study in children with cerebral palsy. Pediatrics 2007; 120: E804-14.
2. Bastiaansen D, Koot HM, Ferdinand RF, Verhulst FC. Quality of life in children with psychiatric disorders: Self-, parent, and clinician report. J Am Acad Child Adolesc Psychiatry 2004; 43: 221-30.
3. Janse AJ, Uiterwaal CS, Gemke RJ, Kimpen JL, Sinnema G. A difference in perception of quality of life in chronically ill children was found between parents and pediatricians. J Clin Epidemiol 2005; 58: 495-502.
4. Waters EB, Wake MA, Hesketh KD, Ashley DM, Smibert E. Health-related quality of life of children with acute lymphoblastic leukaemia: comparisons and correlations between parent and clinician reports. Int J Cancer 2003; 103: 514-18.
5. Hoey H, McGee HM, Fitzgerald M, Mortensen HB, Hougaard P, Lynggaard H, et al. Parent and health professional perspectives in the management of adolescents with diabetes: Development of assessment instruments for international studies. Qual Life Res 2006; 15: 1033-42.
6. Bastiaansen D, Koot HM, Ferdinand RF. Determinants of quality of life in children with psychiatric disorders. Qual Life Res 2005; 14: 1599-1612.
7. Kennes J, Rosenbaum P, Hanna SE, Walter S, Russell D, Raina P, et al. Health status of school-aged children with cerebral palsy: Information from a population-based sample. Dev Med Child Neurol 2002; 44: 240-47.
8. Liptak GS, O'Donnell M, Conaway M, Chumlea WC, Wolrey G, Henderson RC, et al. Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol 2001; 43: 364-70.
9. McCarthy ML, Silberstein CE, Atkins EA, Harryman SE, Sponseller PD, Hadley-Miller NA. Comparing reliability and validity of pediatric instruments for measuring health and well-being of children with spastic cerebral palsy. Dev Med Child Neurol 2002; 44: 468-76.
10. Schneider JW, Gurucharri LM, Gutierrez AL, Gaebler-Spira DJ. Health-related quality of life and functional outcome measures for children with cerebral palsy. Dev Med Child Neurol 2001; 43: 601-08.
11. Wake M, Salmon L, Reddihough D. Health status of Australian children with mild to severe cerebral palsy: Cross-sectional survey using the Child Health Questionnaire. Dev Med Child Neurol 2003; 45: 194-99.
12. Waters E, Doyle J, Wolfe R, Wright M, Wake M, Salmon L. Influence of parental gender and self-reported health and illness on parent-reported child health. Pediatrics 2000; 106: 1422-28.
13. Colver A. Study protocol: SPARCLE-a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy. BMC Public Health 2006; 6: 105.
14. White-Koning M, Arnaud C, Bourdet-Loubere S, Bazex H, Colver A, Grandjean H. Subjective quality of life in children with intellectual impairment -how can it be assessed? Dev Med Child Neurol 2005; 47: 281-85.
15. Dickinson HO, Parkinson KN, Ravens-Sieberer U, Schirripa G, Thyen U, Arnaud C, et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: A cross-sectional European study. Lancet 2007; 369: 2171-78.
16. Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W, et al. KIDSCREEN-52 quality of life measure for children and adolescents. Expert Rev Pharmacoeco Outcomes Res 2005; 5: 353-64.
17. Palisano RJ, Hanna SE, Rosenbaum PL, Russell DJ, Walter SD, Wood EP, et al. Validation of a model of gross motor function for children with cerebral palsy. Phys Ther 2000; 80: 974-85.
18. Beckung E, Hagberg G. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol 2002; 44: 309-16.
19. Landgraf JM, Abetz L, Ware JE. The CHQ: A User's Manual (2nd printing). Boston, MA: Health Act, 1999. 1st printing. Boston, MA: The Health Institute, 1996.
20. Abidin RR. Parenting stress index/short form - Manual. Odessa, FL: Psychological Assessment Resources, 1995.
21. Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life: The remarkable universality of half a standard deviation. Med Care 2003; 41: 582-92.
22. Goldstein H. Multilevel statistical models. Arnold: London, 1995.
23. Arnaud C, White-Koning M, Michelsen SI, Parkes J, Parkinson K, Thyen U, et al. Parent-reported quality of life of children with cerebral palsy in Europe. Pediatrics 2008; 121: 54-64.
24. Janse AJ, Sinnema G, Uiterwaal CS, Kimpen JL, Gemke RJ. Quality of life in chronic illness: Perceptions of parents and paediatricians. Arch Dis Child 2005; 90: 486-91.
25. Garcia-Munitis P, Bandeira M, Pistorio A, Magni-Manzoni S, Ruperto N, Schivo A, et al. Level of agreement between children, parents, and physicians in rating pain intensity in juvenile idiopathic arthritis. Arthritis Rheum 2006; 55: 177-83.
26. Ljungman G, Kreuger A, Gordh T, Sorensen S. Pain in pediatric oncology: do the experiences of children and parents differ from those of nurses and physicians? Ups J Med Sci 2006; 111: 87-95.
27. Mack JW, Hilden JM, Watterson J, Moore C, Turner B, Grier HE, et al. Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 2005; 23: 9155-61.
28. Houlihan CM, O'Donnell M, Conaway M, Stevenson RD. Bodily pain and health-related quality of life in children with cerebral palsy. Dev Med Child Neurol 2004; 46: 305-10.
29. Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006; 4: 58.
30. Boruk M, Lee P, Faynzilbert Y, Rosenfeld RM. Caregiver well-being and child quality of life. Otolaryngol Head Neck Surg 2007; 136: 159-68.
31. Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005; 115: E626-36.
32. Plant KM, Sanders MR. Predictors of care-giver stress in families of preschool-aged children with developmental disabilities. J Intellect Disabil Res 2007; 51: 109-24.
33. Bor W, Sanders MR, Markie-Dadds C. The effects of the Triple P-Positive Parenting Program on preschool children with co-occurring disruptive behavior and attentional/hyperactive difficulties. J Abnorm Child Psychol 2002; 30: 571-87.